There will always be those who are unable to see beyond their own limited parameters of what qualifies as communication, but there will also, thank God, be people like Barb [Rentenbach] (and Carly Fleischmann and countless others), who continue to show us what is possible when we are willing and able to open our minds.
~ My response to a comment on Wednesday’s post
You’re right, I am very emotional about this. because it scares me to death to think that my daughter could be this easily dismissed or feel that she has to prove herself simply because narrow minds refuse to believe her capable of .. well .. anything.
I’m not advocating for a miracle intervention. I’m not even advocating for facilitated communication conceptually. I’m advocating for a human being whose work I admire, whose friendship I’ve been blessed by and who shouldn’t have to carry the burden of proof on her shoulders because she dares to have something brilliant to say.
~ And another
On Wednesday, something happened here. I’ve torn myself apart trying to decide whether it’s best to talk about it or to simply walk away and hope that i’ve already said enough. But I’m not sure that I can. Just walk away that is. Because this little space in this little corner of the Internet — this place of respect and warmth, of love and laughter, of comfort and community and reasoned debate, feels sacred to me. It feels safe. And on Wednesday, it took a turn from feeling safe. I unwittingly and regretfully allowed it to become a platform for prejudice, and I need to make that right.
I’d written a post that I was proud of. Something that I dared, quite immodestly, to say I thought was important. I called it Rethinking Functional Behavior and the Tyranny of Made-up Deadlines. If you missed it, please read it. It means a lot to me, and, I think, to all of us.
The post was about slowing down. About breaking free from the panic caused by what I believe to be the desperately wrong-headed belief that development and growth happen during only some prescribed (and finite) period of time.
I cited Barb Rentenbach, a woman whose book I am slowly but surely devouring (and processing and re-reading and processing some more before absorbing) day after day after day. I noted that Barb, who is non-verbal, types her thoughts, a process that, for her, has very gradually evolved from very heavily facilitated to now independent typing.
I approved a comment in which a reader referred to Barb’s typing as a hoax. I was torn when I approved it for publication, but I thought it was important to address and debunk the accusation, as hurtful as it was, because I have come to learn that even some of the most outrageous comments can represent others’ unspoken, and sometimes even unrecognized, similar sentiments. And if there is skepticism running rampant out there, acknowledged or not, well, we need to talk about it. Because I can think of nothing more dangerous or insidious than allowing prejudice to run unchecked.
But allowing that comment through allowed for more conversation. Which should have been a good thing, but the conversation led to more accusation and ultimately left off in a place that left me angry for Barb and scared to death for my child and really damned sad about how far we apparently really are from truly recognizing, acknowledging and respecting each other’s humanity, and in so doing, abandoning our predetermined notions about who can be capable of what. It’s soul-crushing sometimes to realize just how much work there is yet to do.
I considered deleting the comments entirely after the fact, because I worried about their effect on those who will read them, but I just can’t bring myself to censor the blog ex post facto. It feels wrong. But so too, I hate the thought that a post that I wrote could have brought pain to Barb and to others like her, whose hard-won voices are being so callously silenced, who have been told that their voices don’t count because they aren’t “real”, whose ideas are being tossed to the curb with yesterday’s trash, who are being forced to carry the burden of proof of thinking their own thoughts. I can’t believe I had to write the last part of that sentence. Please, read it again — they are being forced to carry the burden of proof of thinking their own thoughts. For the love of God, can you imagine living like that?
In 1987, I wrote a paper for an AP English class on James Thurber’s short stories. My teacher called it plagiarism. I didn’t really want to admit to her that the most salient “proof” that I had of why it had to be original work was that I hadn’t actually done any research nor read anyone else’s opinions; I’d only read his stories. Mostly because I was too lazy to go and read what other people had to say about them, but also because I had plenty to say myself. But she persisted. She wouldn’t accept the paper. She called my father, a middle school principal at the time, to tell him that I had clearly plagiarized someone else’s work. My father asked her what the source was, planning to read both my paper and the source from which she believe I’d lifted its content so that he could form his own opinion before talking to me about it. Her answer, “I don’t know. I haven’t found the source yet.”
My father was baffled, as was I. She went on to say that she didn’t yet know where I’d taken my paper from, but there was no way it was the work of a high school senior because it was simply too advanced. She assured him that she was going to keep searching for the source, but in the meantime, I was free to prove that I didn’t plagiarise, and when I did she’d give me credit for the paper.
26 years later, I remember exactly how that felt. I remember the anger, the frustration, the impotence, the desperate lack of logic. I remember laughing that I was being punished for doing something well. I remember asking my dad how one can possibly prove a negative. If she could find a source, she had proof. If she couldn’t, it just meant that she wasn’t done searching. Me? I had nothing but my word.
Above all, I remember the doubt. I remember thinking that even my dad likely thought that I had, at the very least, inadvertently read something and absorbed it as my own, later regurgitating it without realizing that I had.
26 years later, I still remember.
I can’t possibly fathom walking through life in some extended-play version of that moment. And that moment is NOTHING relative to this. It kills me to imagine what it must feel like to be told that your thoughts can’t possibly be your own when you’ve fought so damned hard to find a way to communicate them.
To be clear, I am not making an argument for Facilitated Communication, nor am I dismissing the very real dangers of it being abused, just like any other methodology that relies on human beings for its execution.
As I wrote in the comment at the top of the page, what I *am* doing, and why I felt compelled to write this post, is “advocating for a human being whose work I admire, whose friendship I’ve been blessed by and who shouldn’t have to carry the burden of proof on her shoulders because she dares to have something brilliant to say.”
So as much as I may have preferred not to give this topic any further air time, remaining silent in the face of the silencing of others was not an option. Not here — not in my house.
That’s what I’ve got.
Thankfully, someone else has promised to take it from here.
Whenever you’re ready, my friend, my platform is yours.
In the meantime, I’ll be remembering your words about why you write. The ones that struck something deep inside of me when I first read them because I felt like I could have written them myself. But that’s your point, isn’t it? I might be you.
Birds sing not because they have to but because they can, as it is part of their purpose and who they are. Birds strive to sing. They will sing whether or not anyone is around to hear, but trust me, they are all heard. Words are my notes and sentences are my songs. I strive to write. I trust others will enjoy and be lifted by the work, but I will continue to sing either way.
Ed note: I will not allow this post to become a platform for debate about FC, nor will I publish any comments that even remotely violate Diary’s Comment Policy, which can be found in the toolbar to the right of the screen (or below on mobile devices.) Thank you in advance for helping me to keep this place sacred and safe for ALL.
Ed other note: Ariane Zurcher wrote a wonderful post about this as well. Please check it out when you can.
Ed other, other note, added months later .. Read this .. Just do … http://ollibean.com/2014/07/10/i-dont-want-your-protection/